When we found out that Rocco had Type 1 diabetes, he weighed 21 pounds. He was 22 months old, still in diapers. He knew how to walk and he mostly knew how to talk. He did know the word "ouch", but in the first year of 10-12 finger pokes and at least four shots per day, he only said it to me once.
I remember it vividly because I had been expecting to hear him complain for a long time. I cringed every time I had to check his blood sugar or give him an injection of insulin. It had to hurt, right? One night, it finally happened. I checked his blood sugar while he was sleeping, and, as I poked him, he sat straight up, looked me straight in the eye and gave me the meanest look. He said, "Ouch! Mommy that HURTS", growling out the word "hurts".
At first, I remember feeling relief. Relief for, I guess, finally having him tell me how he really felt about the needle hitting his fingertip all day, every day. But, when I look back, and if I am really honest with myself, what I felt was relief that finally I was getting the pain I knew I always deserved. His words stung me like a knife cut, but the pain I felt from his words eased my guilt. The guilt I had felt regarding him getting diabetes. This guilt was a weight that I had strapped on my back the day we entered the ER and constantly carried with me. It was like a blanket I wrapped around me every day as I woke up. Oddly, my guilt felt familiar and safe.
How could I have allowed my little guy to get this? Did I do this to him? Was this what God was trying to tell me while we tried so hard to conceive these little guys and couldn't? Was he saying, "I am not going to give you these angels because this little one is going to have a lifetime of suffering if I send him down to you"? Did he get this because we did in-vitro? I tried everything to become pregnant and become a mom. Did I push too hard, causing my baby to suffer because of my selfish desire to hold him in my arms? Did I do this to him because I was unable to breastfeed while he was an infant due to my congestive heart failure after their delivery?
So for him to finally "blame" me and growl his anger at me, I felt relief. I felt like I was finally being given the punishment I deserved for doing this all to him.
Cognitively, I am aware that none of this is actually the way it all worked. I do not really believe God punishes people or babies. I do not believe that breast feeding or in-vitro impacted his diagnosis. But it is amazing how deep a mothers guilt can go, isn't it? It can burn you so deep in your soul that the most irrational thoughts can become your reality.
My friend once told me during the first month of her son's diagnosis, he had a seizure. It turned out he had a sensitivity to insulin. This cruel joke can sometimes happen. Her husband was out of the country and she had three other kids at home. She held him in her arms, as he seized, while she tried to read the instructions on how to administer the Glucagon, a life saving injection of glucose sent straight to the blood stream. She said she has seldom slept through the night since and hasn't ever forgiven herself. I related very well to her when she told me this story.
Also, I recently read an article about a general practitioner's guilt when his daughter went undiagnosed for a while. He didn't add up the signs of her diabetes - extreme thirst, going to the bathroom a lot, lethargy, and agitation. These signs are easily dismissed because most people just think their child is going through a phase or is just hot due to warm weather. Each one of these symptoms can be explained in a myriad of different ways, but once all put together, they can add up to a diagnosis of Type 1 diabetes.
A parent's guilt can be overwhelming, especially when it relates to something that is life-changing for a child. Our job is to protect these little ones. When we can't protect them from all the world's hurt, it is easy to go into hyperdrive and transfer our energy into guilt. It has been four years since that day when Rocco growled at me, and I can say I am still working through the guilt. I am trying to move forward into a healthy, happy family life that isn't overshadowed by "could haves" or "should haves".
Tell me your mom or dad "guilt" story. It is actually kind of therapeutic. I'm happy to give you the platform. Please, share...